The port catheter install went through yesterday morning. Mornings are incredibly harder to function well for me right now, I definitely ramp up slow in available energy over the course of the day and mornings are the worst. I’d expected not to fall back asleep after the 4 am feeding but did, which meant that I had about 10 minutes to get showered and ready and out the door. Obviously that didn’t happen, I can barely move fast enough to get clothes on in 10 minutes, but with a lot of groaning and painful readjustments I managed to shower, dress, leave, and arrive only about 20 minutes late for check-in. My mother who has been coming down nearly weekly to help out for a few days at a time was here and drove me, while our normal driver-helper stayed at the house on baby duty. Yay juggling responsibilities effectively!

The lateness didn’t seem to affect things much, thankfully. Once again, everyone was just amazing in terms of helping accommodate my legs and hips issue and extra pain, even taking a bit longer during the procedure to do things like move and position me accordingly. This time I had modified anesthesia instead of general anesthesia, and functionally I couldn’t much tell the difference. I still got the gas mask and injections and went to sleep for the duration. I even had a touch of sore throat afterward though no tube went down my throat (I suspect that part was from not drinking water for 12 hours beforehand), and the awakening afterward was another nice slow non-disruptive event. In fact, for about five minutes after awakening in the recovery room, except for a small twinge in my spine, I had the least pain I’ve had in months and months. I enjoyed as much as I could of the tiny respite. I could feel each kind of pain as it started to come back online as the good surgery drugs wore off, which was at least interesting and informative to track if not any fun.

I am experiencing less soreness than I’d expected, though definitely still some. Since I have the tumor in the other armpit affecting mobility there, picking up the baby is an interesting time at the moment. I’m getting help with that whenever someone is available, but I can still move her if needed. Since the surgery I’ve had slightly better mobility in my hips (not stable by far, still dangerous) so I’m carefully enjoying the slight break there while still being cautious since it feels like it could get worse at any moment.

I am now a bionic woman! The device they installed is called a PowerPort, which amuses me. There is some bruising around the site of install, and it’s the first time I’ve had a wound closed with glue (usually they use steri-strips). It’s quite high up on the left side of the chest, a small lump resting below the collarbone that you can feel when pressing across it. There’s a little wallet-sized card I’m supposed to carry with me that has information for any doctors or techs that need to access my PowerPort. They also gave me a keyfob and one of those rubbery bracelets that can also identify the presence of the port, but I think I’ll pass on using those. The informational booklet was interesting, apparently there’s some special scan called a power injection CECT scan that can be done with these ports that allows contrast media to be infused at a rapid rate and gives better definition on scans to soft tissues than normal xrays. Not sure if I’ll need that part, but it sounds cool. I have yet to find out if I’m in the 85% percentile for being able to get blood draws through it, but I’m now ready to receive chemotherapy.

Which, thanks to Medicaid, won’t be happening until next week. (My MRI was also rescheduled to Monday due to the authorization still pending, blah.) Tomorrow I attend my chemo informative class where I presume they’ll tell me about the chemical bath I’m prescribed and more details on side effects than I got at the general meeting with the MedOnc earlier this week. I trundle through the forest of never-ending medical appointments, yay Google Calendar for tracking it all.

But today I actually did some writing. On a potential project I’ve been ruminating on for a couple of years now. So that’s pretty neat, we’ll see if it goes anywhere. That plus this blog entry counts as good work for today.

This is a very full week. That also means it’s a difficult week, compounded by the fact that over the weekend my pain levels started climbing rapidly again and my hips are now even more unstable, giving out several times a day when trying to stand up or sit down. It’s also affecting my sleep again, both making me unable to fall asleep at times and awakening me due to pain other times. It isn’t just my hips but my back, and the pain surges are almost like electric rapid throbbing all up and down my core, wrapping around my ribs, even making it a bit difficult to breathe at times. The lump under my right arm also flares up daily, swelling up enough to put pressure on other muscle groups throughout the right shoulder area and being uncomfortably painful. I can’t do the hot tub (dr’s orders) and I do miss it now, though I’d gotten quite sick of it before childbirth since I was using it several times a day for the pain I was in then. I am allowed bed-buddy and heating pad, so am using that on the shoulders and hips/back, and I put an ice pack on the underarm lump which doesn’t do much but is better than nothing.

Yesterday had the consult for the port catheter install, which is scheduled for horribly early tomorrow morning and which will be difficult both energetically and logistically to accomplish. It is surgery with local anesthesia and heavy sedation, and hopefully also accommodations for the fact that I can’t stretch myself straight on a table or bed. (I spoke to the doctor and he said they can prop my legs up no problem, and I’ll remind them of it tomorrow.) As Jay Lake laughingly calls his, afterward I will have my very own Harkonnen heart plug installed. The port catheter is a device installed into a central blood vessel that feeds directly into the superior vena cava. The doctor was really awesome in the consult, giving me the 30 year history of these devices as he was explaining the procedure. I learned that only about 85% of these allow for blood draws from the area, so hopefully I will be in that majority as I am having difficulty lately with successful blood draws (lots of re-sticks and bruising for days). The main reason the port caths are installed is because chemotherapy drugs are very harsh, and if put in a normal IV will eventually result in collapsed and scarred veins that can’t be used. I won’t have anything visible on the surface once it heals, and it is designed to stay in semi-permanently as chemo treatments will last for months.

Today had another follow-up with the medical oncologist to discuss the CT scans from last week as well as the most recent pain changes and upcoming cath install and chemo. We have also started all the medicaid pre-authorizations so that hopefully we can stay on the timetable for the rest of this week’s plans, though of course that might not happen. (Haven’t yet heard nay on the cath procedure, will call a bit later today to make sure but have to assume that at least is staying on the schedule.) The doc is concerned about the new pain increase and the differences in how I am describing the back pain, so he has ordered an MRI (which we’ve scheduled for Thursday, pending Medicaid approval) on my thoracic spine as the CT scans don’t give a clear picture of what is happening in that area. His concern is that the tumor there might have shifted to putting more direct pressure on the spinal cord, which would be fairly bad news if so, and the MRI will be able to determine that more clearly. Hopefully the MRI scan will be able to accommodate the leg problem also; I was so out of it from pain when I had the first one several weeks ago that I can’t remember if they propped my legs or not.

But I promised good news bits, and here they are. The CT scans from after the radiation treatments were compared to the ones taken before. The effects of the radiation will still be happening for several weeks (they’ll be taking another set of CT scans after 2 rounds of chemo for further comparisons) and so the full effects aren’t yet known, but the liver and lung spots and underarm tumors all either stayed the same or grew only slightly (none of those received any radiation so it’s good that they haven’t changed significantly). The spine had some changes (more will be learned after the MRI on that), but the hip/groin tumor shrank to almost nothing. Also he mentioned no sign of a tumor in the left hip, so whatever badness is happening in my hips is at least not more cancer. The hips will remain weak and unstable until the bone has time to repair itself, so I have to be vigilant for weeks more to come, which is rather scary. It’s also likely that my body is still finishing up flushing the relaxin out of my system from pregnancy, which would contribute to the instability of the hip region. I think I’m more scared about the pain increase and the hip issues than I am about the upcoming chemo.

Speaking of, pending authorization, I will be starting chemotherapy on Friday. (I said it was a crazy week!) We are choosing a very aggressive set of chemicals, such that I will apparently only be able to do a maximum six rounds of this combination before we have to switch it up, due to the danger longer-term to my heart with repeated use. It’s normally given every three weeks but we’ll be trying for every two weeks assuming my blood count permits, to try to hit the cancer as hard and fast as possible. He wants CT scans after two rounds, as I mentioned, and depending on what those scans show will determine how many more rounds of chemo we’ll do before scheduling the mastectomies and underarm lump removal. It sounds like I’ll have a fairly normal range of side effects. Nausea and vomiting can happen for 2-5 days of the cycle; mouth sores; fatigue (ongoing); low blood cell count (peaks about a week after infusion); and of course, hair loss (begins about 2-3 weeks after the first dose). Of all of these, I’m of course most upset about the hair loss, as I have not cut my hair (except for trimming) since I was my son’s age. I like having long hair, never wanted to have anything but since I was a little kid, so that’s another of life’s little ironies for you. The doc assures me it grows back, but that doesn’t change much of the initial yuck of having to go through the hair loss. I plan to do crazy henna designs and wild and wacky scarves, so if you know where to get good head scarves let me know!

Increased pain increasing, so this post is plenty long enough for now.

Well here’s a quick mostly-non-cancer post before we get back to the regular news…

This weekend was my first official Mother’s Day celebration, as last year we hadn’t received custody of The Teen (until my birthday about a month from now). It was certainly bittersweet, given the whole dealing with cancer thing affecting my ability to be mobile and do things, but the sweet won out even given the emotional downness and complexity of this time. Nathan’s mother and stepfather were in town visiting and I think that helped the guys remember to celebrate Mother’s Day (though I could be wrong and they would have remembered anyway).

I received the very thoughtful and lovely gift of silky lounging robes, four of them I believe (might have miscounted, could be five). Since I’ll be heading into chemotherapy land, which is unknown territory impact-wise but likely to affect my energy levels from day to day such that lounging will be most all I’m good for some days, it’s a useful gift. But they’re also bright and vibrantly patterned and silky to the touch, so they’re a feel-good gift as well. I also like having the baby get to be near things that feel nice to the touch, so added bonus there. All in all a much more well-rounded and thoughtful gift than I was expecting (since I wasn’t actually expecting much at all). I love my family!

I also got a framed painting that Nathan’s stepfather did of The Baby which is fabulous (Pat Cardiff is a great artist); my mom now wants to commission one from him of the baby plus me, so we’ll see if he’s interested in taking that on. And a funny Mother’s Day card from The Teen. I didn’t get to spend much time with Nathan on Sunday, as he was doing his own thing most of the day, but we got to go out Saturday night and shake booty for our date-night which is always nice. (Well, I watched my pretty man dance while I stood in place with my cane and wiggled my butt in-between sitting spells, but we modify as we need and do what we can to still have fun during all of this — and I think we’re succeeding better than most others would at keeping some semblance of “normal” existence.)

Nathan’s folks had to leave early-early Sunday morning, but my mom came down later Sunday and we let The Teen stay up a bit late with us to watch all three Sherlock episodes (which my mom hadn’t seen) with friends Andrea and Robert, which was a good and fun shared low-impact activity. Since I’ve been having massive hip instability and extra pain the last few days low-key was a good key to bring in the weekend on.

The baby is only .5 inches longer than at birth, but has gone from a birthweight of 5lbs 14 ounces to 8 lbs 12 ounces in a month, thus reaching what probably would have been her birthweight if she’d gone to term. I don’t mind the smaller package, especially since we escaped any of the health problems associated with pre-term babies — it extends the time I can pick her up and carry her around. She continues to be the most amicable baby it has been my pleasure to know, not fussing unless there’s a reason for it (food, diaper, comfort) and calming down rapidly when she does get fussy. She also is mostly fitting her sleep schedule to mine, as much as is possible I think, which is another huge help. Yay for easy babies! Although speaking of, she’s fussing now, so this concludes your family post for the day.

Dealing with Medicaid is a special hell, in terms of getting things scheduled and actually done. Each procedure needs “pre-authorization” that takes anywhere from 1-5 days, so nothing happens on a speedy time frame and there have been several re-schedules due to the authorizations not going through.

Radiation finished up last week, though the effects will be ongoing for a few weeks according to the doctors. Skin irritation on the abdomen, and some variable and lack of sensation in the anal and vaginal areas continue, hopefully as temporary effects. Hips are definitely still quite unstable, and the left hip continues to have very uncomfortable problems that make me think there is something bad happening on that side beyond compensatory imbalance. I definitely want to be wrong on that feeling.

We did another chest/abdomen/pelvis CT scan post radiation today (finally, after 3 reschedules) so that will hopefully tell us more about whether there is anything newly wrong on the left hip, as well as the progress so far from radiation treatment. It was painful and I was unable to straighten my left leg, thankfully we could arrange pillow props under my knee and still do the scan I cried and had to break once to sit up for a bit, but didn’t scream so that is some improvement from when I first began radiation a few weeks ago. Next week we have a consult for installing a port catheter in my chest for chemotherapy (and hopefully also the install itself, assuming we successfully navigate the pre-authorizations). My medical oncologist said that while the port will be sore for a few days, there’s nothing stopping us from beginning chemo right after it is in. So possibly as early as late next week, almost surely by the week after, I’ll be beginning chemotherapy treatments. We will do some number of these, every 2-3 weeks depending on how my blood cell count keeps up and in healthy ranges. Then we’ll schedule a mastectomy, which for me can’t come fast enough at this point because the lump under my arm is getting to be in the way and really painful. I am hoping it responds well to chemo so I can get some relief before surgery, but if it keeps up this bad I will of course be talking to the doctor to see if we have other options sooner like radiation for that spot or something.

I’m actually reading a couple of books, which I haven’t done in quite a long time. It’s good, it’s sparking writerly thoughts, unsurprisingly. My brain seems to be taking on the logistics of figuring out how it wants to be working during all of this madness, which pleases me since it’s a good brain and generally solves those types of problems well. Patience with the progress is a little trickier but I’m managing it admirably given everything else, I’d say.

I keep promising baby posts but reneging; hopefully I’ll quit being that naughty. In the meantime, still perfect baby, still awesomely low maintenance, still gorgeous and developing her superpowers daily. If you’re local, come meet her and join her fan club!

Coming back from a place where writing can’t happen (as opposed to isn’t happening, which implies more choice in the matter) is interesting. I have felt no guilt about not-writing during this time, since the inability is so obviously related to physical and mental capacity being impaired due to cancer and not any sort of attitudinal problem. That doesn’t mean I haven’t felt bad about not getting writing done, or frustrated about the inability to keep up with things like attending local conventions for my craft. I do get upset about those things, but it feels a fairly standard irritation whenever one is stretched too thin on resources.

Blogging more regularly was/is a first step back toward daily writing. It’s more low-impact on creative energy than fiction writing, while still evoking the routine of words-on-page that is so important for sustaining daily output. This post is more to note the beginning of the next step, a low-grade mental discomfort, or itch-equivalent, where I have not quite enough energy yet to sustain a concerted creative effort at a computer sitting but the desire to be “doing something” of that sort increases another notch or three. Hopefully that means that the actual energy to do creative writing is coming back soon, since the in-between state isn’t the most fun to inhabit even if it is a sign of further progress.